Originally compiled by Laura Ball, David Beukelman & Lisa Bardach
From a chapter in the book:
Augmentative Communication Strategies for Adults with Acute and Chronic Medical Conditions
Edited by: David R. Beukelman, Kathryn L. Garrett, Kathryn N. Yorkston
Published by: Paul H. Brookes Publishing Co.

Additions by Kristy S.E. Weissling

ALS Association. (2006). Patient, family, caregivers. Clinical and drug development news. Retrieved 10 April 2006, from http://www.alsa.org/patient/news.cfm.

ALS Association (2003). Living with ALS: Adapting to Breathing Changes and Use of Noninvasive Ventilation. Informational videotape and booklet. Available from The ALS Association National Office, 27001 Agoura Road, Suite 150, Calabasas Hills, CA, 91301-5104.

Bach, J. R. (1993). Communication status and survival with ventilatory support. American journal of physical medicine & rehabilitation72(6), 343-349.

Bach, J. R. (2003). Threats to [ldquo] informed [rdquo] advance directives for the severely physically challenged?. Archives of physical medicine and rehabilitation84, S23-S28.

Ball, L. J., Beukelman, D. R., & Pattee, G. L. (2004). Acceptance of augmentative and alternative communication technology by persons with amyotrophic lateral sclerosis. Augmentative and Alternative Communication20(2), 113-122.

Ball, L. J., Beukelman, D. R., & Pattee, G. L. (2004). Communication effectiveness of individuals with amyotrophic lateral sclerosis. Journal of Communication Disorders37(3), 197-215.

Ball, L.J., Beukelman, D.R., Pattee, G.L., Bilyeu, D.V. (2006). Duration of AAC Technology Use by Persons with ALS. Submitted to Augmentative and Alternative Communication.

Ball, L. J., Beukelman, D. R., Ullman, C., Maassen, K., & Pattee, G. L. (2005). Monitoring speaking rate by telephone for persons with amyotrophic lateral sclerosis. Journal of Medical Speech-Language Pathology13(4), 233-241.

Ball, L. J., Nordness, A. S., Fager, S. K., Kersch, K., Mohr, B., Pattee, G. L., & Beukelman, D. R. (2010). Eye Gaze Access of AAC Technology for People with Amyotrophic Lateral Sclerosis. Journal of Medical Speech-Language Pathology18(3), 11.

Ball, L. J., Schardt, K., Beukelman, D. R., Pattee, G. L. (2005, November). AAC facilitators for persons with amyotrophic lateral sclerosis. Poster presented at the American Speech Language Hearing Convention, San Diego, CA.

Beukelman, D. R., Fager, S., Ball, L., & Dietz, A. (2007). AAC for adults with acquired neurological conditions: A review. Augmentative and Alternative Communication23(3), 230-242.

Beukelman, D., Fager, S., & Nordness, A. (2011). Communication support for people with ALS. Neurology Research International2011.

Beukelman, D. & Mirenda, M. (2005). Augmentative and alternative communication: Supporting children and adults with complex communication needs. Baltimore, MD: Paul H. Brookes Publishing Co.

Blackstone, S. W., & Berg, M. H. (2009). Social networks: A communication inventory for individuals with complex communication needs and their communication partners.

Borasio, G. D., Sloan, R., & Pongratz, D. E. (1998). Breaking the news in amyotrophic lateral sclerosis. Journal of the neurological sciences160, S127-S133.

Borkowski, J. G., Benton, A. L., & Spreen, O. (1967). Word fluency and brain damage. Neuropsychologia5(2), 135-140.

Brown, R.H., Meininger, V., Swash, M. (2000). Amyotrophic Lateral Sclerosis. Malden, MA: Blackwell Science, Inc., p. 3-6.

Brownlee, A., & Bruening, L. M. (2012). Methods of communication at end of life for the person with amyotrophic lateral sclerosis. Topics in Language Disorders32(2), 168-185.

Brownlee, A., & Palovcak, M. (2007). The role of augmentative communication devices in the medical management of ALS. NeuroRehabilitation22(6), 445-450.

Cedarbaum, J., Stambler, N., Malta, E., Fuller, C., Hilt, D., Thurmond, B., & Nakanishi, A. (1999). The ALSFRS-R: A revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). Journal of the Neurological Sciences, 169, 13-21.

Ciechoski, M. A. (2002). Coping with change. ALS Association (Ed.), Living with ALS: Manual 2 (pp 18-22 ). Calabassas Hills, CA: The ALS Association.

Cipresso, P., Carelli, L., Solca, F., Meazzi, D., Meriggi, P., Poletti, B., ... & Riva, G. (2012). The use of P300‐based BCIs in amyotrophic lateral sclerosis: from augmentative and alternative communication to cognitive assessment. Brain and behavior2(4), 479-498.

Doyle, M., & Phillips, B. (2001). Trends in augmentative and alternative communication use by individuals with amyotrophic lateral sclerosis. Augmentative and Alternative Communication17(3), 167-178.

Duffy, J. (2005). Motor Speech Disorders: Substrates, Differential Diagnosis, and Management. (2nd Ed.) St. Louis, MO: Elsevier Mosby.

Dunning, M. (December, 2005). A community based integrated pathway of care for pwMND. International Symposium on ALS/MND Allied Professionals Forum, Dublin, Ireland.

Eisenberg, D. M., Kessler, R. C., Foster, C., Norlock, F. E., Calkins, D. R., & Delbanco, T. L. (1993). Unconventional medicine in the United States--prevalence, costs, and patterns of use. New England Journal of Medicine328(4), 246-252.

Fried-Oken, M. & Bardach, L. (2005). End of life issues for people who use AAC. Perspectives on Augmentative and Alternative Communication, 14, 15-19.

Fried-Oken, M., Fox, L., Rau, M. T., Tullman, J., Baker, G., Hindal, M., ... & Lou, J. S. (2006). Purposes of AAC device use for persons with ALS as reported by caregivers. Augmentative and Alternative Communication22(3), 209-221.

Fried-Oken, M., Mooney, A., & Peters, B. (2015). Supporting communication for patients with neurodegenerative disease. NeuroRehabilitation37(1), 69-87.

Gelinas, D. F., O'Connor, P., & Miller, R. G. (1998). Quality of life for ventilator-dependent ALS patients and their caregivers. Journal of the neurological sciences160, S134-S136.

Gutmann, M.L. & Gryfe, P. (1996, August). The communication continuum in ALS: Critical paths and client preferences. Proceedings of the seventh biennial conference of the International Society for Augmentative and Alternative Communication, Vancouver, British Columbia, CAN.

Hillemacher, T., Gräßel, E., Tigges, S., Bleich, S., Neundörfer, B., Kornhuber, J., & Hecht, M. (2004). Depression and bulbar involvement in amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders5(4), 245-249.

Kidney, D., Alexander, M., Corr, B., O'Toole, O., & Hardiman, O. (2004). Oropharyngeal dysphagia in amyotrophic lateral sclerosis: neurological and dysphagia specific rating scales. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders5(3), 150-153.

Kubler, E. & Kessler, D. (2005). On grief and grieving: Finding the meaning of grief through the five stages of loss. NY: Scribner.

Leighton, S. E. J., Burton, M. J., Lund, W. S., & Cochrane, G. M. (1994). Swallowing in motor neurone disease. Journal of the Royal Society of Medicine87(12), 801-805.

Lomen-Hoerth, C., Murphy, J., Langmore, S., Kramer, J. H., Olney, R. K., & Miller, B. (2003). Are amyotrophic lateral sclerosis patients cognitively normal?. Neurology60(7), 1094-1097.

Luo, F. (2009). Personal narrative telling by individuals with ALS who use AAC devices. State University of New York at Buffalo.

Mathy, P., Yorkston, K., & Gutmann, M. (2000). AAC for individuals with amyotrophic lateral sclerosis. In (D. Beukelman, K. Yorkston, & J. Reichle, Eds.) Augmentative and Alternative Communication for Adults with Acquired Neurologic Disorders. Baltimore: Paul H. Brookes Publishing Co., pp. 183-231.

Mayo Foundation for Medical Education and Research. (2006). Nervous System: Amyotrophic lateral sclerosis. Retrieved April 10, 2006, from http://www.mayoclinic.com/health/amyotrophic-lateral-sclerosis/DS00359.

McDonald, E. R., Wiedenfeld, S. A., Hillel, A., Carpenter, C. L., & Walter, R. A. (1994). Survival in amyotrophic lateral sclerosis: the role of psychological factors. Archives of Neurology51(1), 17-23.

McKelvey, M., Evans, D.L., Kawai, N., & Beukelman, D. (2012). Communication styles of persons with ALS as recounted by surviving partners. Augmentative and Alternative Communication28(4), 232-242.

McNaughton, D., Light, J., & Groszyk, L. (2001). “Don't give up”: Employment experiences of individuals with amyotrophic lateral sclerosis who use augmentative and alternative communication. Augmentative and Alternative Communication17(3), 179-195.

Miller, R. G., Rosenberg, J. A., Gelinas, D. F., Mitsumoto, H., Newman, D., Sufit, R., ... & Kasarskis, E. J. (1999). and the ALS Practice Parameters Task Force. Practice parameter: the care of the patient with amyotrophic lateral sclerosis (an evidencebased review). Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology52(7), 1311-1323.

Moss, A. H., Casey, P., Stocking, C. B., Roos, R. P., Brooks, B. R., & Siegler, M. (1993). Home ventilation for amyotrophic lateral sclerosis patients Outcomes, costs, and patient, family, and physician attitudes. Neurology43(2), 438-438.

Moss, A. H., Oppenheimer, E. A., Casey, P., Cazzolli, P. A., Roos, R. P., Stocking, C. B., & Siegler, M. (1996). Patients with amyotrophic lateral sclerosis receiving long-term mechanical ventilation: advance care planning and outcomes. Chest110(1), 249-255.

Neary, D., Snowden, J. S., Gustafson, L., Passant, U., Stuss, D., Black, S. A., ... & Boone, K. (1998). Frontotemporal lobar degeneration A consensus on clinical diagnostic criteria. Neurology51(6), 1546-1554.

Nordness, A. S., Ball, L. J., Fager, S., Beukelman, D. R., & Pattee, G. L. (2010). Late AAC assessment for individuals with amyotrophic lateral sclerosis. Journal of Medical Speech-Language Pathology18(1), 48-56.

Pérez, A.I.G., & Dapueto, J.J. (2014). Case report of a computer-assisted psychotherapy of a patient with ALS. The International Journal of Psychiatry in Medicine48(3), 229-233.

Pinto, A. C., Evangelista, T., Carvalho, M. D., Alves, M. A., & Luis, M. S. (1995). Respiratory assistance with a non-invasive ventilator (Bipap) in MND/ALS patients: survival rates in a controlled trial. Journal of the Neurological Sciences129, 19-26.

Piper, A. J., & Sullivan, C. E. (1996). Effects of long-term nocturnal nasal ventilation on spontaneous breathing during sleep in neuromuscular and chest wall disorders. European Respiratory Journal9(7), 1515-1522.

Reeb Jr, K. G., & Stripling, T. E. (1989). Payment for Assistive Devices by the Veterans Administration.

Richter, M., Ball, L., Beukelman, D., Lasker, J., & Ullman, C. (2003). Attitudes toward communication modes and message formulation techniques used for storytelling by people with amyotrophic lateral sclerosis. Augmentative and Alternative Communication19(3), 170-186.

Simmons, Z. (2005). Management strategies for patients with amyotrophic lateral sclerosis from diagnosis through death. The Neurologist11(5), 257-270.

Spataro, R., Ciriacono, M., Manno, C., & La Bella, V. (2014). The eye‐tracking computer device for communication in amyotrophic lateral sclerosis. Acta Neurologica Scandinavica130(1), 40-45.

Strand, E. A., Miller, R. M., Yorkston, K. M., & Hillel, A. D. (1996). Management of oral-pharyngeal dysphagia symptoms in amyotrophic lateral sclerosis. Dysphagia11(2), 129-139.

Wasner, M., Klier, H., & Borasio, G. D. (2001). The use of alternative medicine by patients with amyotrophic lateral sclerosis. Journal of the neurological sciences191(1), 151-154.

World Health Organization, (2005). International Statistical Classification of Diseases and Related Health Problems (The) ICD-10. Geneva: WHO Press.

Yorkston, K., Beukelman, D., Strand, E. & Bell, K. (1999). Management of motor speech disorders in children and adults. Austin, TX: Pro-ed.

Yorkston, K., Beukelman, D., & Tice, R. (1996). The Sentence Intelligibility Test. Lincoln, NE: Madonna Rehabilitation Hospital.

Yorkston, K. M., Miller, R. M., & Strand, E. A. (2004). Management of Speech and Swallowing Disorders in Degenerative Disease. (2nd Ed. ). Austin, TX: Pro-Ed.

Yorkston, K. M., Strand, E., Miller, R., Hillel, A., & Smith, K. (1993). Speech deterioration in amyotrophic lateral sclerosis: Implications for the timing of intervention. Journal of Medical Speech-Language Pathology1(1), 35-46.

Zeitlin, D. J., Abrams, G. M., & Shah, B. K. (1995). Use of augmentative/alternative communication in patients with amyotrophic lateral sclerosis. Journal of Neurologic Rehabilitation9(4), 217-220.